Eran Klein

“Undiagnosing” multiple sclerosis: The challenge of misdiagnosis in MS

Objective: To describe the clinical characteristics of encounters with patients misdiagnosed with multiple sclerosis (MS). Methods: A cross-sectional Internet-based physician survey of MS specialists was performed. Results: The response rate for the survey was 50.4%. Of those who responded, the majority (95%) reported having evaluated 1 or more patients who had been diagnosed with MS, but who they strongly felt did not have MS, within the last year. The majority of respondents (>90%) also reported the use of disease-modifying therapy in a proportion of these patients. Most respondents (94%) found clinical encounters with these patients equally or more challenging than giving a new diagnosis of MS. Fourteen percent of respondents reported that they did not always inform such patients of their opinion that they did not have MS. Conclusions: The misdiagnosis of MS is common and has significant consequences for patient care and health care system costs. Caring for a patient with a misdiagnosis of MS is challenging, and at times honest disclosure of a misdiagnosis represents an important ethical concern for neurologists. More data are needed on this patient population to improve diagnostic acumen and the care of these patients.

Staying in the Loop: Relational Agency and Identity in Next-Generation DBS for Psychiatry

In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices.

Four ethical priorities for neurotechnologies and AI

Artificial intelligence and brain–computer interfaces must respect and preserve peoples privacy, identity, agency and equality, say Rafael Yuste, Sara Goering and colleagues.

Brain-computer interface-based control of closed-loop brain stimulation: attitudes and ethical considerations

Patients who have undergone deep brain stimulation (DBS) for emerging indications have unique perspectives on ethical challenges that may shape trial design and identify key design features for BCI-driven DBS systems. DBS research in cognitive and emotional disorders has generated significant ethical interest. Much of this work has focused on developing ethical guidelines and recommendations for open-loop DBS systems. While early trials of open-loop DBS for depression gave disappointing results, research is moving toward clinical trials with closed-loop or patient-controllable DBS systems that may modulate aspects of personality and emotion. Though user-centered design is an increasingly important principle in neurotechnology, the perspectives of implanted individuals on ethical issues raised by DBS are poorly understood. We solicited those perspectives through a focus group and set of qualitative interviews of participants in trials of DBS for depression and obsessive-compulsive disorder. We identified f...

Advance directives in the trauma intensive care unit: Do they really matter?

Despite advances in the care of the injured patient, 22% of trauma patients admitted to the intensive care unit will die from their injuries. As a majority of these deaths will occur due to withdrawal of care, intensivists should be proficient in their ability to discuss end-of-life care with patients and families. While the use of advance directives to document patients’ wishes has increased, their utility is uncertain. We review the effectiveness and obstacles of advance directives.

To ELSI or Not to ELSI Neuroscience: Lessons for Neuroethics from the Human Genome Project

The Ethical, Legal, and Social Implications (ELSI) program of the Human Genome Project stands as a model for how to organize bioethical inquiry for a rapidly changing field. Neuroscience has experienced significant growth in recent years and there is increasing interest in organizing critical reflection on this field, as evidenced by the creation of “neuroethics.” A nascent framework for reflection on the implications of neuroscience is emerging but significant work remains, given the pace and scope of neuroscientific developments. The adoption of an ELSI program, modeled on that of the ELSI program of the Human Genome Project, promises a way for neuroscience to meet important organizational, educational, and policy objectives. Review of recent criticisms of the HGP ELSI program suggests that an ELSI program for neuroscience would face certain obstacles. Those interested in a neuroscience ELSI program will need to develop appropriate resources to overcome these obstacles.

Engineering the Brain: Ethical Issues and the Introduction of Neural Devices

Neural devices now under development stand to interact with and alter the human brain in ways that may challenge standard notions of identity, normality, authority, responsibility, privacy and justice.

Dementia Specialists and Early Adoption of Amyloid Imaging

The goal of this study was to describe the attitudes of U.S. neurologists specializing in dementia toward the use of amyloid imaging in the diagnosis of Alzheimers disease (AD). A cross-sectional electronic physician survey of dementia specialists at U.S. medical schools was performed. The response rate for the survey was 51.9% (135/260). Greater than 83% of respondents plan to use amyloid imaging to evaluate patients for AD. Most respondents intend to use amyloid imaging as an adjunctive diagnostic modality to confirm (77%) or rule-out (73%) a diagnosis of AD; 24% plan to use amyloid imaging to screen asymptomatic individuals for evidence of cerebral amyloid. Specialists who do not intend to use amyloid imaging (16%) express concern about the cost (73%), the usefulness (55%), and likelihood of patient (55%) and clinician (59%) misinterpretation of findings. The need for patient pre-test counseling was endorsed by a large percentage (92%) of dementia specialists (higher than for genetic testing (82%)). In conclusion, dementia specialists, particularly young specialists, are likely to be early adopters of amyloid imaging. Assuming ready availability, this new technology would be used as a confirmatory test in the evaluation of AD, as well as a screening tool for asymptomatic pathology. Specialists recognize the complexity of interpreting amyloid imaging findings and the need for patient counseling before undergoing testing.

Physician compensation for industry-sponsored clinical trials in multiple sclerosis influences patient trust.

BACKGROUND Perceived physician financial conflicts of interest of can affect patient trust. Payment to physicians for industry sponsored clinical trials in multiple sclerosis is a relatively new potential source of physician conflict of interest. There is limited available data on how physician payment for trial involvement in multiple sclerosis clinical trials may influence patient trust. OBJECTIVE To understand how patient trust is influenced by information about physician payment for multiple sclerosis clinical trials. METHODS An anonymous online instrument was developed. RESULTS 597 people with multiple sclerosis participated in the study. The study found that 61% of patients who had not previously participated in a clinical trial estimated that they would have lower levels of trust in their physician if the physician was paid for involvement in their clinical trial. Among former clinical trial participants, 38% self-reported a lower level of trust. Other potential physician-industry relationships, such as industry consulting or giving industry-sponsored talks, also adversely affected trust, though to a lesser extent than physician payment for subject participation in clinical trials. CONCLUSIONS Results of this study demonstrate that physician payment for study participation in multiple sclerosis clinical trials is a potential conflict that can adversely affect patient trust.

Ethical issues in the neurology of aging and cognitive decline.

Caring for persons with Alzheimers disease presents neurologists with ethical challenges. Some of these, such as end-of-life care or research participation, are well known and have significant overlap with challenges in other areas of medicine or other neurologic diseases, such as cancer or traumatic brain injury, while others, such as the rise of biomarker-based diagnostics, are more novel and reflect the impact of developments in the science and clinical care of Alzheimers disease. A thoughtful and systematic approach to these challenges, from the preclinical to the late symptomatic stage of this disease, is required and will help clinicians be better advocates and stewards of their patients. This chapter addresses a number of the most pressing ethical problems facing patients, caregivers, and clinicians during this disease, including early and presymptomatic testing, assessment of decision-making capacity for treatment or research participation, restriction of driving, remote monitoring, assisted suicide, and treatment of disruptive behaviors.